Page 1 of 1

contact me if you have adrenal carcinoma

PostPosted: Wed Oct 28, 2009 9:56 am
by shani
I am looking into a clinical trial in Arizona testing osi-906 a new drug.
It is instead of the Metotane and since my niece is stage 4 with the adrenal cancer spreading to her hip and liver we are very desperate. She is only 26 yrs. old. If you know any information of this rare cancer please write.
Thanks : thanks :

Re: contact me if you have adrenal carcinoma

PostPosted: Thu Feb 04, 2010 9:10 am
by DedeOliver
I had adenoid cystic carcinoma 12 years ago, but have not had a reoccurance. How is she doing?

Re: contact me if you have adrenal carcinoma

PostPosted: Fri Apr 29, 2011 12:05 pm
by ndudkowski
Hello, my husband was just diagnosed with adrenal carcinoma sarcoma. Apparently, it is VERY rare. We are just beginning on this path. He had surgery but needs chemo and radiation but none of the oncologists have ever seen this kind of cancer. I have been on-line researching this. I had a conference call with the Mayo clinic in Arizona yesterday and they are reviewing his case; hopefully they know something. The important thing right now is that he is feeling so good. What kind of results are you finding in Arizona?

Re: contact me if you have adrenal carcinoma

PostPosted: Sat Apr 30, 2011 6:34 am
by sharon
shani, This cancer is extremely rare. It is adrenal carcinomsarcoma and it is a rare variant of an already rare cancer - adrenocortical carcinoma. I am changing your forum membership to allow you to enter that forum also.

I live in southern Arizona. I have heard some good reviews about Mayo Clinic, Phoenix. They are thorough in their diagnostic approach. You might also want to consider the new Cancer Treatment Centers of America facility in Goodyear AZ. But, you would have to make sure that your insurance covers them. You can --> Click Here to look through their alphabetical listing of insurances they allow.

In any event, you have a 'friend' in Arizona. :hug:

Re: contact me if you have adrenal carcinoma

PostPosted: Wed May 04, 2011 8:21 am
by ndudkowski
I called the Mayo clinic and gave them a short narrative of my husband's case and they are reviewing it. We are so confused at this point. The Mayo clinic does accept our insurance and I have a sister that lives in Phoenix. I want the best treatment that is available but there is so little information out there. Does anybody know of other cancer treatment centers out there that may know something of this cancer? thanksnedra

Re: contact me if you have adrenal carcinoma

PostPosted: Sat May 07, 2011 7:40 am
by ndudkowski
Hello everybody, I got an appointment for my husband at the Mayo Clinic in Scotsdale, AZ. Hopefully, they will know something and thus, begin the journey.

Re: contact me if you have adrenal carcinoma

PostPosted: Thu May 26, 2011 8:27 am
by ndudkowski
Well, we are here at the Mayo Clinic and just saw a hemotology oncologist. This is our third opinion. We were told that there are only 4 reported cases of this kind of cancer. It has been identified at adrenal carcinosarcoma. We have had three path reports and all three say something different. We are going with the Mayo's findings. Today we meet with a surgeon and tomorrow with a endocrinologist. They are suggesting radiation and chemo. It has been two months and no one knows what to do. In the meantime, I want to know what is going on in my husband's body. Is it growing again? My husband is now having pain in his back area and I feel so helpless. This is going to be a long journey but we are so happy with the Mayo and the plan they have in place. I am so scared.

Re: contact me if you have adrenal carcinoma

PostPosted: Fri May 27, 2011 9:20 pm
by sharon
We are all afraid of 'the beast', but all we can do is try to put one foot in front of the other, find doctors who are credible, and then try to step into the unknown abyss. All rarecancers have unique journeys because of the rarity, which is very frightening. Just remember, we are always here to listen and help, if at all possible.